Monday, July 13, 2009

The Problem with Progression

Of late, the MS has been giving me a pretty good ass whuppin'. It's getting harder for me to stumble around my apartment, and I'm pretty close to making the decision to start using my wheelchair for indoor as well as outdoor mobility. Up until now, I've used the chair exclusively for my travels through the beehive of streets in New York, but now the uncomfortable realization is hitting that I also need it for excursions from the bedroom to the kitchen. It looks as if the progression of my disease is about to force me to crash through yet another psychological barrier.

During my first visit to an MS specialist, I remember the doctor going on about "stopping the progression of the disease". I was new to the world of MS, my head was spinning with thoughts of "spinal lesions", "lumbar punctures", and "brain MRIs", and I simply could not process what he was talking about. Progression? What the hell is progression? I have a little limp in my right leg, upsetting yes, but hardly the end of the world...

Well, now I'm all too well aware of the meaning of progression. In six years, that little limp has reached out and put a choke hold on much of the rest of my body, and try as I might, I just can't seem to wriggle free. I could list a litany of my defective body parts, but what's the point? It would most likely just need to be updated again next week. Each new day seems to bring with it a changing set of circumstances, and unfortunately, those changes don't ever seem to be for the better.

To state the obvious, the problem with progressive neurologic disease is that it progresses. Little by little, you lose yourself to your illness. As great a toll as this progression takes on the physical body, the psychological impact of watching yourself whither away over weeks and months and years cannot be overstated. Back in the dark ages of my MS experience, I'd sit in the neurologist’s waiting room and see other patients in their wheelchairs and scooters, and thank the heavens that I was not one of them. Of course, I knew that they did not just one day materialize disabled, and that they had arrived at their current physical conditions incrementally, over time. I just couldn't fathom that I would follow the same road. I'd look at those poor souls, my mind would reel, deliberately set me apart from them, and quickly force my attentions elsewhere.

Now, I'm the guy sitting in that waiting room in a wheelchair, and I can see the less disabled patients looking at me through familiar eyes. I make it a point not to appear dour or downtrodden, and I'm always quick with a wisecrack or two, but I know too well the quiet horror they are feeling. Truth be told, they are not wrong in feeling it. As good a spin as you can put on it, as upbeat and determined as you might be in the face of it, the prospect of doing battle with an insidious enemy that slowly swallows you from the inside out is a perfect example of why human beings come equipped with a healthy capacity for denial.

No matter what stage of the disease you're in, peering forward carries with it an element of dread. The endless road of progression, if left unchecked, must ultimately lead to an extremely ugly place. Along the way there are milestones to be reached; the first time you can no longer climb a flight of stairs, the first cane, the realization that you can no longer sign your name.

At first I measured the disease’s progressive toll in the slowly shrinking distances I could walk, first in miles, then blocks, then yards, and now feet. Every holiday and special event has become a psychological landmark, a yearly milestone from which I can look back to the same moment in previous years and assess just how much I've lost, while simultaneously wondering about the scope of the wreckage I'll be dealing with in another year’s time. Will this Super Bowl be the last that I can watch from a couch that I've walked to under my own power? Or the last that I will be able to feed myself chips and dip? Or the last that I'll be able to manipulate the remote control? Or, simply, the last?

Ongoing disease progression leaves us little time to mourn the losses we've suffered. If one were to literally lose a leg, as horrible as that would be, the trauma could be experienced, mourned, and then adapted to, leaving a person in a state of permanence, albeit an unfortunate one. With progressive illness, the losses just keep mounting, and life becomes a constant exercise in adaptation. I haven't had the chance to fully mourn the loss of the use of my right hand, because I'm aware that my left appears to be following suit. I watch people happily strolling through the park, and feel a deep yearning, but that yearning is shadowed by the apprehension of insults yet to come. As layer upon layer of disability piles up, the process of mourning any single loss gets overwhelmed by the sheer volume of them all.

Strangely, and thankfully, I've found that the reality of each new stage of disability does not approach the horror that accompanied the anticipation of it. Back in the days before my illness, I'd have never thought I'd have the capacity to adapt to the level of disability I'm now experiencing. I once would have categorized the possibility of my being forced to rely on a wheelchair as unthinkable, but when that moment arrived, the world somehow kept spinning. The loss of functionality in my right arm and hand has led me to learn how to do things with my left, and through all manner of adaptations, I've managed to maintain an acceptable quality of life. So far, at least, the realities of encroaching disability have not been as ghastly as I'd imagined they would be. I am constantly aware, though, that there will come a tipping point, when even the barest illusion of normalcy will disintegrate under the weight of some new undeniable reality.

Of course, I am not without hope. Even without intervention, MS is an unpredictable beast, and patients with the most aggressive forms can sometimes find themselves reaching plateaus for years at a time. Medical research is shedding new light on the disease on an almost daily basis, and the promise of stem cells to repair damaged nerve tissue is steadily moving closer to becoming a reality. Trials of neuroprotective agents are currently underway, and radical new theories about the very nature of multiple sclerosis are finally being given proper scientific scrutiny.

Still, though, the disease marches on, the struggles become harder, and, with the help of friends and loved ones, the best we can do is strive to stay rooted in the moment...

53 comments:

Hi Marc, your eloquence just makes it all the more harrowing. However things progress (although sadly "regress" seems the more apt word here), I hope you can at least keep on writing - for a very long time. Tom (in Zurich).

I cried reading this., this is what I can't stop thinking right now for a couple weeks about just that. I remember being DXed, the first years, I read too many terrible things, thanking God I wasn't like that, for me the disease wasn't so devastating, as so much of the reading said. I walked funny, but hey, people just thought I was a drinker!! Now full-time in a chair I am devestated.kicker

Your description of the waiting room is very poignant for me - I remember the fearful eyes and swollen faces of all the people in their wheel chairs and scooters the first time I walked in the MS Center at Johns Hopkins 6 years ago - believing that could never be me. I now use a walker and scooter - but I know I've plateaued - at least for the past two years - hopefully you will too!

I recently started using the power chair indoors. I attempt to plan for what will go next and inevitably guess wrong or underestimate the severity. I too remember the waiting room and simultaneously being fearful, grateful and hopeful that it wouldn't be me. This has summed up the experience better than I ever could.

Hi, I like you have spent six 1/2 years with this bear of an illness. I have PPMS. I have just about conceded my ability to tottter around my house with only my forearm crutches. I don't seem to be able to reconcile the fact that I must use my wheelchair all the time.Your grasp of your feelings leave me close to tears and grateful that you have expressed yourself so well.

You've verbalized everything I've felt for 11+ years, from the horror of being in the doctor's waiting room, to cringing at people I work with who have MS who struggle to stay erect, to being in denial, to accepting that I need my power a chair to get 4 feet from my bed to the bathroom.

I hope you stabilize soon. It's the only way the interminable mourning will go away.

Mark, excellent post. My situation mirrors yours significantly, although I hung up my forearm crutches for good about 6 months ago and plant my butt firmly in my power wheelchair each day, all day.

The challange for people like us is to live a dual life, emotionally. First, we need to recognize, accept, and deal with all that is happening to our bodies- adjusting to what is changing in both the near and more distant future. It is probably healthy to spend a certain amount of time, but not too much, mourning and grieving our loss. Second, we simultaneously need to be certain to simply live each day to its fullest and find joy in the life situation in which we find ourselves- play the proverbial cards that we are dealt. It is a tough balancing act. Too much time spent lamenting the horrible things that are happening to our body results in a sad, negative, unhappy person leading a sad, negative, unhappy life. Too much time spent stopping and smelling the roses each day results in a person in denial of what is happening, and a person who is not taking the necessary steps to mitigate the disease progression, like scouring the earth for potential treatment options and innovative mobility aids.

This is a difficult balancing act to pull off, and one that none of us signed up for. Although I know I'm not supposed to spend much time worrying what others think of me, I try to live my life such that those whom I love and admire will think "isn't he dealing with his situation in an inspiring manner (or impressive or courageous, etc)." My other goal is to the extent possible, to have those who are spending time with me forget, if only for a moment, that they are interacting with someone who is going through something as traumatic as progressive MS. Sometimes I meet these goals. Other times I fail. Then I get up and try again.

Thank you all for your heartfelt and insightful comments. Seems like this post really struck a nerve with some of us.

Dealing with the rigors of MS, or any other progressive illness, can be a very private, very isolating battle. I suppose there's some solace in knowing that others share a similar burden, but I only wish that none of us were being forced to go through this.

There's really nothing anybody can say to make the experience easier. There's nothing to do but get up each morning and do our damned best to make each day worthwhile despite the hardships we've been dealt...

I'm off to the National Institutes of Health tomorrow, for follow-up to my initial visit last month. They'll be doing some more MRI scans to get a better look at the monster lesion that is causing my problems. I will report back when I get the results...

your post resurfaced the feelings I had when I was dxd over 5 years ago. although i am not in a wheelchair, i feel that day is inevitable, since my right leg is growing weaker each month and the distance it can walk without it acting up is becoming less and less.

like you said, at first i could walk miles, now blocks, i fear it will one day be yards or feet

but i must carry on since i have a life to live, college to finish, getting married and having kids. i am determined to not let MS stop my life, maybe slow it down, but never stop it.

There is no way in hell I could have expressed it any better. I hope you don’t mind that I shared your post with my friends. You put into words something that all of us wish we had the eloquence to explain. My friends herd your words…….and the words “crystal clear” came to mind just now.Sadly….that is about as astute as I can be.

Thanks for the gift of a description. Thanks for being the voice. Thanks for the research that has helped so many. Thanks for your continued involvement that has helped me and so many others.

I think we are all in a constant state of grieving. Just when we grieve one loss we are hit with yet another or many others. I was diagnosed six years ago and like all of you I try to maintain a sense of humour and lightheartedness about this mess but sometimes I just feel really pissed off and frustrated! (Most of my friends and family never really see this though because who wants to be a drag?) I too cringe when I hear the cliche "I may have MS but MS doesn't have me!" Yuck!

I really, truly, sincerely hope this new theory of Dr. Zamboni gives us all the break that we need so we can stop the grieving process and start living. God willing that it may even give us a little of our old selves back!! Fingers crossed!! I wish the best of luck to you!

Hi Marc,I too have MS. The first symptoms showed up when I was twelve years old. Numbness in the feet. Tripping over said feet. The doctor said it was "growing pains". At fifteen after yet another fall, I broke several bones in my foot and ankle. I did not feel any pain. For about a week I kept telling my parents that something was wrong. Finally I demanded that I see doctor. I created such a fuss that my mother relented. The family doctor opened his office on a Saturday morning to see me. Within an hour I was admitted to hospital. A year later I was told I might have MS. But maybe not. MS in a fifteen year old was very rare. Most people did not believe me. Especially teachers.

Any way, I just turned forty-nine last week. I walk with a walker. Been blinded twice. Done the HBO treatments, a year of Beta-Seron nearly killed my liver, even tried the non-gluten diet. Nothing worked. But now I have found a way of coping with MS that I did not expect. Taking care of my beloved husband who is dying of untreatable brain cancer. He is becoming the child I never had. (I was advised not to have children by the neurologists). Eric needs help eating and dressing. Walking is difficult. Five weeks ago he fell and broke his shoulder. I am so busy taking care of him I do not time to worry about myself.Thanks for listening.

First level of denial - "I won't be diagnosed with MS!" Second level of denial - "I'll never get that bad!" If I were a better writer, I would have written exactly what is in your blog. Absolutely right on.

I am now using a rolling walker and a scooter. I'm also looking at needing to bring the scooter in to the house soon.

Hope lies ahead! I'm going to Tijuana this summer for a stem cell treatment. I don't have time to wait for the U.S. to approve it. I've got kids. My goal is to be able to walk my youngest into his Kindergarten class in the Fall using just a cane.

It is so amazing all the people getting together all around the globe, all getting into to different pages and stories is fantastic thankyou all of you for sharing it has really lifted me the last few months. I knew there were lots of people out there suffering too. but hearing you all so close and sharing is great!! Some days I feel so low but hearing you Marc reminds me not to be so better some times I use electric wheelchair inside for years so I understand Marc my son when he was younger used to get quite angry when I moved to the Electric chair and insisted that I walk as long as I could. I did but got used to the chair fairly quickly. It is difficult now to transfer problem-with-progression but hey chin up and keep smiling :-)

You rock Marc!Your post expresses many of the things that I think about, reflect on again and again, and struggle with. Last summer I was able to walk with out a mobility aid. August began my cane use. After a summer of many falls,and recurring mild to moderate CNS symptoms and flares, and Christmas tree MRI results, a LP in Dec. confirming MS, I was DX'd with RRMS. Jan 2010, a 5 day stay in hospital for an MS exacerbation, I walked out with bilateral crutches.Placed on Copaxone. Late March a second exacerbation and hospitalization, 3 neurologists confirmed PPMS. I cannot walk more than 20 feet with the crutches and am now using a wheelchair for greater distances. The progressive nature of MS is insidious. I just didn't think that it would hit me so fast and with such fury. I'm still in the process of accepting the DX, let alone the rapid impairments. Exhausted, but still determined for a quality lifewith my loved one's.Wishing you well, Kim

In my 25yr with C. P. M S, this is the best forum/blog I've seen.Real expressions from intelligent people of the anxiety, fear and anger that come from the choas of this disease. In 1990 I got involved with unique 2nd stage rehabilitation program called Shake-A Leg, Newport RI. SAL's practioners offered wholistic healing with emphasis on "new life skills" to multi-disabilities.For 6 weeks in the summer 25 M&F would join in a residential body awareness program. SAL attracted Paras, Quads, TBI, CP, MS, MD. Therapies included: aquatics, counseling,feldenchreiss,rolfing,theater,PT,massage,relaxation and sailing.It was(sorry after 24yr no more)the only rehabilitation program I knew that taught how to live and move beyond a dissability .Peer association is the best teacher. The young man who wakes up in the hospital bed hooked up to a ventilator, starts his life over ,or a roommate with CP. From these associations I learned so many coping skills and moved beyond my ever increasing disabilty.I learned how to act out the acceptance phase of a chronic traumatic disease.

My MS was a carbon copy of what is in the blogs..limped, tripped, DXD, one cane, 2 canes, manual chair 6 yr post dxd. Chaired for 19 yrs.Oh yes, I looked at a chair, first with such hatred, but now my best friend. Every coin has two siides. The tail is what this insipid dIsease takes from us and heads is what we give back to the world. My toes don't move,my left hand cannot contract,wear a leg bag,my BM are controlled,wheelchair confined 19yr. blah, blah . The head side-MS has not denied me my life as a father(4), husband ,sailor, business career and giver. I have great carers and a loving wife of 33yrs. I always fought to the last moment before succumbing to the next lower plateau.Sage words from someone who started this journey at 44 and now approaching 70... Never look beyond the present or dwell on yesterday. Create goals for yourself and make them attainable and measured. I have been lucky to travel the world on 4 wheels; left a meaningful footprint for future generations of disabled sailors.I write this only so those who are more recently DXD will see from people like "ananymous" 12yr-49yr and myself that there is so much to live for...just not as in the original plans. Unforgettable words from my 2nd opinion Dr. 25 yr ago- " You will understand a new word "chronic" and, 'MS isn't the worst disease to have' " Since I'm still on the right side of the sod and still typing with one digit..he's right so far !Jimmie Huega Center, Eagle Colorado, 1989, made a big difference in my life with MS. Suggest those 5 days to everyone.

Hi,Excellent!I'm writing as the husband of a SPMS sufferer who was dxd in June '06 when fully mobile and now is confined to a wheelchair. She can transfer with the use of a standing turner and help. however everything is VERY tiring. Fatigue is such an issue. It seems MS has a good grip of my wife!I can relate to so much of your post, albeit from the other side. I guess we're lucky that we have twin girls, though my wife is always apologising to me for, in her words, holding us back.......... It was good to read the post from the guy who "travelled the world on 4 wheels" - I must say that to my wife - hopefuly we can follow in his tracks!Good luck to you and all readers here! I've added this site to my favourites!Take care,P

You are an amazing writer. . .I was diagnosed with PPMS in late 2006. I had been falling and in late 2005 broke BOTH of my wrists. Even so, it took me a year to face the thought of trying to figure out the cause. My father had had MS (he lived to be 91), and I think I knew in the back of my mind it would be the same for me. Although I started on Copaxone, I hated it and discovered LDN. So far, it's working wonders for me. . .but like you, I face the future with a fair amount of dread. Thank you for sharing so that all of us MS'ers can see some of our own thoughts articulated so well. . .

I couldn't put into words these thoughts, and I'm so glad that you were able to. In a very similar place, but as a single mom, I'm trying desperately to keep working as long as possible. Don't think any of the people in my life are ready to accept that I'm really "down for the count" and that it really isn't going to get better some day.

Hi, I'm Josefine from Germany and a woman of a German MS-forum gave me the tip to contact you... I think she could be right! Could I get your mail address because I don't want to publish my special topic on a blog... (perhaps I do only not see your contact?). That would be great! Are you on facebook? Thanks.

Such a lovely person, such lovely writing, such a lovely wife... You talk about so many things that I regularly feel and think about. Thanks for your words and this blog. Thank you for all the emotions you create!I'm sure something will come up to help you. Keep hope!

"Unforgettable words from my 2nd opinion Dr. 25 yr ago- " You will understand a new word "chronic" and, 'MS isn't the worst disease to have' " Since I'm still on the right side of the sod and still typing with one digit..he's right so far !Jimmie Huega Center, Eagle Colorado, 1989, made a big difference in my life with MS. Suggest those 5 days to everyone."

Is this still available? What 5 day experience? I really like your attitude and that of your family as well. Please give your wife some XOXOXO from me. Ol' Granny Know It All Oh yes, Happy Thanksgiving! Yes, that is today, I just read your post. Mazel Tov!!

Hi,reading about progression was exactly my MS in a nutshell.Everything that was posted was true,I am typing this with tears in my eyes.I have a saying "If there is a Heaven and Hell, when I die I will go to Heaven because this is living in Hell"

This was a phenomenal post. I was diagnosed in 1991. Went through many of the things you did. Experienced my own four stages of grief: shock, terror, denial, sarcasm. Embraced some of the conventional strategies - Betaseron, physical therapy - and some pretty inconventional ones. Finally gave up hope and stopped EVERYTHING. I wouldn't even take a multivitamin.

And somehow I started to get better. Learned how to walk again in a water tank. I haven't used a cane in more than 10 years, recovered my vision (with exceptional help from vision therapy and vision training), was able to go back to work. Have taken nothing stronger than an Advil in almost 20 years.

I'm nobody special. I had the blessed boost of some effective stratgies and therapies. I won't post my name or email but if you are willing to share yours in your blog I'll respond with some specifics. Don't give up - try something different.

I was diagnosed in 1997. In 2009 I had to stop working in my chosen profession of 28 years in programming and systems administration.

Bladder and bowel issues and constant pain. My legs were so spastic I could barely walk. Hung out on the couch all day. Had to do something.

In May 2012 I had a baclofen pump installed in my gut. Overnight, all my lower back pain I've endured for 25 years was gone. But my legs were so very weak from lack of use. Atrophy had occurred.

I started physical therapy to get the strength back. A year later I go to PT 5 days a week. MWF I'm on an FES bike. Functional Electrical Stimulation. TuThu I'm on a walking FES machine. The change is dramatic. I am walking much better. My bladder issue has improved dramatically. From urinating every 20 minutes a year ago to every couple hours.

Look up rtilink.com at what the machines do. If there is a Brooks Rehab Hospital close by contact them.

A very well expressed piece Wheelchair Kamikaze, and my thanks for it. I am in the middle of full blown denial, two years diagnosed, still walking (with the balance of a three year old but still) and trying not to picture too bad a future. My twitter account is less used than it should be but contains some good links for the UK (that's me)

Thank you for writing this. Without looking for it, I found this last week, ironically a day after my specialist informed me that the RRMS he diagnosed me with six years ago has transitioned to secondary progressive. Your eloquence and honesty bring me a little closer to making peace with progression.

Hi, I fell onto this blog, I don't know if you still use it.. I am 20 years old, got diagnosed one week ago, and reading all these posts brought me to tears,part of me is in denial i don't want to face the facts that one day I won't be able to walk anymore.. Everyone is telling me Ill be fine but I know by reading all this i won't be..Dont know what to think or feel anymore

Hi Sandra, please, please, don't consign yourself to a wheelchair just yet. You've just been diagnosed, and although the MS drugs are far from perfect, there is mounting evidence that they can indeed alter the course of the disease, and help stave off the worst aspects of MS. There's a good chance it will be decades before the disease keeps you from walking, if ever. There is a tremendous amount of research being done, so try not to despair. I have a rare form of the disease called Primary Progressive, which only afflicts about 10% of people with MS, so my experiences with the disease are definitely not typical for the majority of folks with MS. given your age and sex, I'm thinking that you probably have RRMS, which is much more treatable. I understand how upsetting this all must be to you, but to lots of your own research, educate yourself about your situation, and become your own best advocate. Most of all, live your life to the fullest. Nobody knows what's coming around the next bend, whether they're sick or not.

I was diagnosed 17 years ago, and I have been fortunate (I mean really fortunate) that I continue to be able to get around with just a cane. I know I state the obvious, but I find it difficult to accept MS-related limitations when acceptance is the only choice. (I'm not talking about giving up; I'm talking about accepting what I can't change.) I have found that I prefer denial over acceptance in theory. But in practice, it's problematic. For example, it takes me at least 2 hours to get ready to go somewhere instead of the 30 minutes or hour that it took before my diagnosis. And I have a tendency to be in denial about that, so I try to get ready in 30 minutes or an hour. I hurry as fast as I can, and I am still late to my appointment. As a result, the situation causes stress and fatigue. When that happened recently, I realized what I had done and that I needed to stop doing it. I know it's much smarter for me to accept that limitation and plan ahead accordingly. I realize this example may seem miniscule compared to the challenges you face. But I think it is important to accept all any limitation we cannot change, whether it is large or small.

Wow......simply said. You took my thoughts and placed them into words. Thank you for putting it into words that map it out in harmony and in sadness. Its a bitter sweet to know and understand this disease so well that you can connect the dots which lie ahead.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...